CHAT Jeanine - starting GH/local Drs

[Guest guest]

Hi Jeanine,

What hospital do you use here in Cleveland? We have been using the Cleveland

Clinic for , but have been less than happy with the Endocrinology

Dept there. We found out yesterday, during a GI appt, that the Endo we've

been having so many problems with currently, is the Head of the Dept, so I

have no idea what we're going to do now.

One of the biggest problems we've been running into, is that all the Drs

here want to do, is put on GH. They don't seem to be concerned about

his weight, or weight-to-height ratio. They don't worry about his growth

velocity, or his overall health. When we've expressed concerns about his

hypoglycemia, or insulin resistance, they have been less than forthcoming

with information, support, or a plan for handling these problems.

On our first visit to the Endo Dept at the Clinic, we met Dr . She was

nice enough, and seemed interested in working with us, since she has a

couple of RSS kids already with her service. When we asked how she felt

about GHT, she was skeptical as to whether it would work, since most RSS

kids are not GHD. She told us that she would be willing to do a " trial run "

for 6-8 months, but if that did not yield dramatic results, she would

discontinue treatment. This was our first visit with her. We were only

asking for information. But immediately following this visit, GH showed up

at B's house, along with a nurse to teach everyone how to give the shots,

and B was started on GHT before we knew what was happening. As we got deeper

into our research of GH, and it's most effective use, we decided to stop

therapy, and revisit Dr to discuss our concerns.

Research shows that GH does not rule growth in children under the age of 2

yrs, and that " caloric catch-up " is most important at this age. was

about 15 months old at the time, and was still having problems gaining

weight. On our second visit, we brought this fact to her attention, and

expressed our concerns as to whether would be able to gain enough

weight to keep up with a growth velocity increase of 1.5-2 times his current

rate. She told us that if we were going to wait for B to " catch-up " that we

would never be ready to start GH, and that she didn't need to see B again,

until we were ready to begin GHT. That was the last time we visited her.

We kept in contact with Dr H, and when she felt that B had completed his

caloric catch-up, and that it was time to look into starting GH, we went in

search of another Endo. The second endo we tried was Dr . He is not a

hands-on kind of guy. He seems to leave his residents to do all the

" hands-on " work and then comes in to answer questions, etc... We explained

that we were in contact with an Endo in NY (Dr H) that had extensive

experience with RSS children, and that we were interested in finding an Endo

here that would be willing to collaborate with her. He stated that he had no

problem with this, but wondered why we weren't going to NY to use Dr H. We

explained that making the trip to NY was just too expensive for our current

financial situation.

Dr had no problem with starting B on GHT either, but expressed

concern over some of the tests that Dr H wanted run on B before beginning

therapy. He promised to contact her, and told us to make an appt with him

for 3 months later.

Three months later, we returned for our second visit with Dr , only to

find that he had not bothered to contact Dr H, and had gotten rid of all the

information we had given him on the first visit. We explained that our

research showed that the tests that she wanted run, were to determine if B

was in premature adrenarche, or insulin resistance, and why this was

important. He suddenly agreed to run the tests, attempted to make us feel

guilty for pushing the issue by stating that the amount of blood needed for

the extensive testing Dr H wanted would required two or more blood draws at

separate times, and sent us on our way. How frustrating!

That was in Feb, and we still haven't been able to move forward with the

testing. Yesterday, we found out that the bone age scan, run on both knees,

was read only as an x-ray to determine whether or not B had any

malformations, or fractures. The GI said that she's never heard of a bone

age scan done on the knees, and that as far as she knows, they only use the

hands at the Clinic, so it looks like we will be starting all over for the

one tests that has been completed. Talk about frustrating!

I was wondering if you've had any more success with the hospital/Drs that

you have found here in the Cleveland area? If you like to chat, or trade

emails my Yahoo ID is grandmax2ab, and my email address is pcpets

@adelphia.net (no spaces, of course)

Hope to hear from you

Pat (g-ma to , RSS, 28 months, 20# 9oz, 30.1 " , Prevacid, Singulair,

GT)